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Quality of life outcomes in children with Hirschsprung disease
Lucy Collins1, Brennan Collis1, Misel Trajanovska2
1Department of Paediatric Surgery, The Royal Children's Hospital, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia.
Insights
Children with Hirschsprung disease (HD) experience reduced psychosocial quality of life (QoL) and functional outcomes. Fecal incontinence significantly impacts both physical and psychosocial QoL in HD patients.
Area of Science:
- Pediatric surgery
- Gastroenterology
- Quality of Life Research
Background:
- Morbidity is common after Hirschsprung disease (HD) repair.
- Quality of life (QoL) outcomes in children with HD are inconsistently reported.
- Validated questionnaires are needed to assess QoL in HD patients.
Purpose of the Study:
- To measure QoL outcomes in children with Hirschsprung disease.
- To identify factors affecting QoL in HD patients.
- To compare QoL outcomes with healthy population controls.
Main Methods:
- Prospective cohort study (Level II evidence) of 60 HD patients (2004-2013).
- Parents completed validated questionnaires: PedsQL, FIC QOL, Baylor Continence Scale, Cleveland Clinic Constipation Scoring System, and Vancouver Dysfunctional Elimination Syndrome Survey.
- Results compared with published healthy population data.
Main Results:
- Significant reduction in psychosocial QoL (social and emotional) compared to healthy children (p=0.03).
- Psychosocial functioning negatively correlated with age, fecal incontinence, constipation, and dysfunctional elimination.
- Fecal incontinence also reduced physical functioning QoL (p=0.007); HD patients had higher incontinence rates (p<0.01).
Conclusions:
- Children with Hirschsprung disease exhibit significantly diminished psychosocial QoL.
- Functional outcomes, including continence, are significantly impaired in HD patients.
- Fecal incontinence is a key factor negatively impacting QoL in this population.
Background:
Morbidity following repair of Hirschsprung disease (HD) is common. However, quality of life (QoL) results focused on HD children are contradictory. We aimed to measure QoL outcomes in HD children using validated questionnaires.
Methods:
Patients with HD, managed at a large tertiary pediatric institution between 2004 and 2013, were identified. Parents completed validated questionnaires. Results were compared with published healthy population controls. QoL outcomes were measured using Pediatric Quality of Life (PedsQL) and Fecal Incontinence and Constipation Quality of Life (FIC QOL). Functional outcomes were assessed using Baylor Continence Scale, Cleveland Clinic Constipation Scoring System, and Vancouver Dysfunctional Elimination Syndrome Survey.
Results:
Parents of 60 HD patients [M:F 49:11; median age 6.4years (2.3-10.9)] were interviewed (59% participation). The majority (47/60, 78%) had rectosigmoid disease. There was significant reduction in psychosocial (social and emotional) QoL compared with healthy children (p=0.03). Psychosocial functioning was affected by increasing age (r=-2.72, p<0.001), fecal incontinence (r=-0.475, p=0.007), constipation (r=-1.58, p=0.006), and dysfunctional elimination (r=-2.94, p=0.004). Fecal incontinence also reduced physical functioning QoL (r=-0.306, p=0.007). Children with HD had significantly higher levels of fecal incontinence (p<0.01).
Conclusions:
We have demonstrated that HD children have significant reductions in psychosocial QoL and functional outcomes.
Level Of Evidence:
Prognosis Study - Level II (Prospective cohort study).
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